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Hi Angie,
Sooooo sorry for the tardy reply, please forgive me.. A lot has been going on here at home / school, and I haven't stopped for a minute...The school didn't know what to do with my child's behavior, and I had to go to the school to observe what they are doing with him, and show them what they were doing wrong. They were not giving the correct sensory input for his behaviors, causing more behaviors.. This happens once and a while. I didn't forget about you / Laura. Its good you have a DAN. I read your mail again, sorry I missed that your daughter can not walk which explains the PT.
GF ? CF diet is not a success for us either, Papaw doesn't go by the rules of the diet which is hard to keep it going....so we are going to do Enzymes...which breaks down foods, and helps the body digest....and cuts down Candida, which causes behaviors.
I know all too well about
spitting out supplements, Nick does this too, he is a stinker as well....lol... Be very careful with Chelation Treatment....if IV is mentioned don't do it. I can't recall the names of chelations meds at this moment started with an ("S" and it was a oral chelation) I will look it up and send the name to you. September was a busy month for me and so is October, I am so behind on my replies.
Getting urine sample, it would be most difficult getting it from a little girl, I do agree. i got one form Nick, after they taped a urine cup for boys to his private area, and "he did not like that very well". ( I don't blame him ! ) I don't know what doctors or hospital may have available for little girls to get urine sample....but I do know there are toilet inserts available to catch urine...hospitals use them....maybe they can give you one. The DAN doctor could get one for you. This might be an option. Can your
daughter sit on the potty?
That's wonderful that Laura had Early Intervention, it a big plus that you are a teacher...this is great! I don't think public schools are always an option either. Depends on child / school.
I am always e-mailing Nicks teacher to suggest sensory activities for Nick, but it seems lately the school is having a hard time listening to my suggestions, they will have to learn the hard way I guess....but I will keep insisting that they listen. His teacher keeps asking me to observe which is good, as she is trying to establish a good relationship.
Types of Autism, your right the Spectrum is quite large, and its good the Neurologist is trying to label Laura's place on the spectrum....but he does need help from Autism Resources who deal with Autism on a daily bases, which would be able to identify where on the spectrum she is...Is there an Autism Resource Center near you?
An evaluation from them will help, but the final diagnoses from the Neurologist is the key to getting SSI / Medicaid, and other available programing she needs. Waivers and etc...
Its good to hear Laura stopped banging her head. Looks like she is making a big effort to be sociable as well...that's a "very good" sign.
Looks like Laura has Pica as well. That is a "very" hard disorder to fight....trust me I know.
Chelation only brought Nick's Lead levels down to 17, which is a huge drop from 49.....we seem to be able to keep his lead levels at 20 / a little bit below, but need to lower it to single digits, which is the acceptable levels. There is a long road ahead of us. Right now I have been dealing with the school because of Nicks behaviors, he is biting the teacher, and that not good. Only time I have known of him biting is when he is penned down,
and biting is his defense. The teacher can't get that through her head. I am preparing for teacher / parent conference....plus a discipline behavior evaluation that the school wants to do...If they think they are going to discipline my child, they are in for a "rude awakening". I will introduce them to my fury......lol
They don't want to see that side of me...lol...
Lead can leach out of the bones when the body is in need of iron / calcium supplements..and proteins. The body searches for these and then excepts the lead from the bones, the body becomes its own enemy. I don't think I explained that well. My brain has been picked lately with stress added. My reply is less than helpful.
Nick is tearing up anything in his path lately which isn't lead related. I think he has dental problems, from biting so hard on objects. Possibly an exposes nerve from a broken tooth. I couldn't tell when I
looked....mostly fearing he might bite me...gotta watch that!
A good thing to practice is getting lead level blood work done every 3 months. If levels are in single digits, its not alarming. Everyone has a small amount of lead in their body. Being your daughter has a history, its good to keep an eye on that.
Unless your worried about other metals in her body, I would hold off on Chelation. Just my opinion, as I am not a doctor. Chelation is hard on the kidney's / heart. Lead exits the body through the urine.
Make sure Laura gets plenty of water, bottled is best. Please keep me posted on how Laura is doing.
Hopefully things here at home will calm down, and I can resume my lead studies, and causes of Pica.
This a link to the Autism Support Group I created if you would like to join.
http://health.groups.yahoo.com/group/groupsupport/ I send a lot of helpful information to the group. We would love to have you : )
Take Care,
Deborah Brock
jamieangiejacob@... wrote:
jamieangiejacob@... wrote:
Hi Deborah...
Let me see if I can answer your questions...
Laura is actually going to a DAN dr. here in MI. He is almost 2 hours away, so it's a whole day excursion. Even though she has only been diagnosed with institutional autism, he is still treating her. We've tried the GFCF diet...no difference. She is on a bunch of supplements, but now likes to spit them out rather than take them like she did before...little stinker! The DAN dr. is working toward chelation, but I'm having a really hard time getting a urine sample on her...little tough on a girl. But we're trying!
Laura was in the Early On program through our schools. The therapy was minimal, and the special ed. teacher that came to our house did an OK job. I'm a teacher myself, so I'm always very critical. She is supposed to be going to the special ed. preschool now, but has been in intensive PT for the past 2.5 weeks...2 hours every day. She (and I) just can't do both.
As for autism...I think I've read about every article out there. I keep wavering back and forth. I know there is a huge spectrum, but her neurologist is being very cautious before giving her the official dianosis. Frankly, they don't know what to diagnose her with! But she loves to be with other kids...especially her brothers; she used to bang her head on the floor when we first got her, but does that no longer; reciprocates play, but doesn't imitate except for clapping or banging on the table. So, it's a mystery still, but we're trying every avenue we can. And, yes, she mouths everything!
So, what has your experience been with chelation? Has it helped your son? I didn't realize that it could elevate again. Is that just with chelation...when it leaks out of the bones, or can it do that on its own? How do you know which chelation is safe?
Angie
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